Hi, my name is Tristan McGregor

This is my story. I was born on June 3rd, 2021 at 11:32 am, weighing 7 lbs 3 oz and 18.5” long. My mommy and daddy were ecstatic at how perfect I was. A couple of hours later I started throwing up stomach bile and was rushed to my local children’s hospital in Kansas City where numerous tests were run on me to see what was wrong. Tests came back days later and it turns out I have the same disease my daddy had – Hirschsprung’s. I went in for surgery on June 8, 2021 at only 5 days old to see how severe my Hirschsprung’s was. Turns out I have the rarest and most severe form of the disease, total intestinal Aganglionosis. None of my colon, large intestine or small intestine has any ganglion cells which are what makes the bowels relax and contract and be able to go to the bathroom. So since I have none, I was given an ostomy at 50 cm of the small intestine, a g tube for feeding and am on TPN for nutrients. I will be on these for the foreseeable future until I get older and explore options for my best quality of life. We are currently travelling to the University of Nebraska Medicine and working with renowned G.I. Specialist David F Mercer, MD, PhD, FRCS(C), FACS.

Thank you so much for reading my story. If you feel so inclined to donate, please know you’ll be donating to a savings account for me; to help me and my family out for the day-to-day struggles including daily medications and supplies, medical bills, home health care, OT and PT therapy, specialist visits across the country. A portion of the proceeds will be donated to other children in need or Hirschsprung’s foundations. Thank you again for your time and support.